In Honor of Stuart

Spring Update

Stuart's
next MRI is on Wednesday morning. This will be the first MRI since we moved to
a 4-month cycle. I would be lying if I said that I was not crazy anxious. While
these last 4 months have been blissful in general, they have not come and gone
without some challenges, some struggles and some milestones. When I reflect
sometimes on Stuart's progress, I realize just how much I sometimes take for
granted because Stuart is so amazing. Part of this, is because we like to treat
him as "normal" as we can, but I think another part of it, is that
Stuart has accomplished so much over the last 27 months that it is sometimes
hard to fathom. Two years ago, Stuart had just received his first stem-cell
rescue and was preparing for his fourth round of chemotherapy, which was also
the first of the "high dose" rounds of chemo (sounds relatively
benign but "high dose chemo" regimens are ridiculously tough) - his
body was battered. Today, Stuart is less than 2 months away from
"graduating" out of pre-K into kindergarten and less than 4 days away
from starting tee-ball (the River Dogs)! Just over 2 years ago, Stuart was
still suffering from posterior-fassa syndrome, where he could not speak and
needed help moving around. Last weekend at the park, Stuart was shaking his
"booty" for all to see and singing that absurd song "I'm sexy
and I know it- and I'm not afraid to show it" out loud for anyone to hear.
Two years ago, Stuart would sometimes spend all day laying in a hospital bed
and would rarely speak to even the nicest of the doctors and nurses. Back in
February of this year, Stuart skied five days out of six in Jackson Hole and
would routinely introduce himself to ski instructors as Stu-Stu.

Stuart
had another corrective eye surgery done 3 weeks ago- right before Easter. It
was the exact same surgery -- on both eyes -- that we had tried last year
around Easter. But we switched to a new surgeon who came highly recommended and
whom we really like. Dr. Steele was pretty confident that he could straighten
Stuart's eyes and give him better depth perception and peripheral vision but as
far as Stuart getting back to Binocular vision (seeing 3-D, etc...) we will
have to wait and see. He said it was a 4 out of 5 chance that this would be the
very last eye surgery Stuart would ever need. While the surgery was done in the
Day Hospital it was still a pretty big deal for Stuart (and for us). As Stuart
was struggling to wake up in the recovery room, and having a pretty tough time
with pain and nausea, it dawned on me again how many times he has gone through
this crazy routine these last two years. Going to the hospital for either a
surgery or a major procedure has become very routine, for us at least. And even
though this has been Stuart's life for the past two plus years he still
struggles each time and it doesn't get any easier. As Stuart drifted back to
sleep, Dana and I did some counting; this was Stuart's 8th surgery in the last
27 months and he has had full anesthesia 25 times over the same period (#26
will be on Wednesday, although Dana thinks we're missing a few emergency MRIs).
This doesn't even include the injections in his head that he got while getting
the Intrathecal Radiation. As brave and as strong as Stuart always is, he still
has his moments where he basically yells, Enough Already- I certainly can't
blame him. This last time we had to be at the hospital by 6:00 AM, which meant
we had to wake Stuart up a little after 5. Keep in mind, Stuart had not been to
the hospital for anything major since back at Christmas. Also, keep in mind
that although we had done our best to prepare him for the day, we know most of
our discussion did not fully register with him. No, as he was soundly sleeping
6 feet from his brother in his cozy monkey pajamas, I hardly think he was
"prepared" to be woken and thrown into a car to go for surgery. He
was pissed. He hit Dana a bunch of times and then he promptly took off his
shoes and socks when we got outside and it was super cold. When he started
yelling, "please, please take me back inside" it was all I could do
to turn the key to the car. Then, when we started down the highway, Stuart
started yelling, "next time we have to do this, I want it to be Bo-Bo that
has to go and not me...it's always me...why is it always me?" Good
question. Don't have a good answer. We try to be as honest as possible but the
reality is there is no good answer- not for Stuart- not for anyone. And we've
been warned not to try to explain too much because he's too young to process it
and too much information will only add to his anxiety. When we give him the
whole, "everyone is different" and this is just something that we
have to do with you to make sure that you are 100% healthy, he will ask,
"why did God make me have a brain tumor?" Or sometimes, "why do
I have this bump in my head (his Ommaya Reservoir) and no one else has
one?" Or, "why do I have to always go to Lisa and Ms. Branson (his OT
and PT specialist's) and Bo doesn't?" All reasonable questions. All very
tough to answer. At this age it's especially difficult because he knows he's
"different"...kids on the playground see him as "different"
and treat him that way, but he doesn't know why. As a parent it's very, very
hard to watch. I can't even imagine what goes through Stuart's head when kids
on the playground single him out and say he can't play with them. He's been
through so much (and he's only four!) and we just want him to catch a break.
Unfortunately we met with Stuart's surgeon last Friday and we learned (we had
kind of been prepared for this after watching his eyes heal) that the surgery
was only "partially" corrective. True to Murphy's law, Dr. Steele was
able to correct the horizontal crossing of Stuart's eyes but now for some crazy
reason he is experiencing vertical crossing where there hadn't been any before.
We are going back to patching one eye for a month while Stuart's eyes
completely heal to see if it will help but Dr. Steele has already mentioned the
possibility of a third surgery - very frustrating. I am sure Stuart is pretty
frustrated as well, certainly considering he is in the room while we discuss these
matters with the Doctor. He must be like, "no kidding, it didn't
work- haven't you heard me when I told you I am seeing double or that my vision
is all blurry?" Dr. Steele was trying to comfort us when he told us that
even if Stuart never regained complete binocular vision all was not lost. He said, "look, he may not fly planes and it is not likely he will
be picked first for any sporting teams but he is going to be just fine."
That was actually tough for me to hear- not because I care if Stuart is a
sports star- I don't. It is just that I wish there was not going to be yet
another thing that causes Stuart to stand out. The past two years have been so
hard on him that we just want him to have something come easy like making a
friend or being able to draw a circle or catch a ball. I guess we haven't fully
grasped that even though he made it through treatment, kids with brain tumors have
a very long road ahead of them.

Maybe it
is just his age and hopefully just coincidental but Stuart has become obsessed
with asking about death these days. He wants to know why people die, why some
kids don't have parents, when most people die and when he is going to die. He
was super nauseous after surgery the other day and he couldn't keep anything
down for about a day and a half. Yet, he kept asking for food. When we
explained that he needed a little more time for his stomach to get better, he
told us he thought that if he didn't eat anything he was going to die and he
really didn't want to die. Stuart now equates grey hair to someone that is
going to die soon. We have told him that this is nonsense and that both of us
have grey hairs and both his grandfather's have Lots of grey hairs and none of
us are dying for a long time but he is adamant, "I want my hair to always
be blond- not grey!" I have read that these types of questions are typical
of children that are around hospitals and/or sick people, nevertheless it is
not something we feel super comfortable talking about.

In
preparation for Kindergarden, we just had Stuart's annual "review" of
all the services he gets through the public school system. Everyone in the room
is a huge Stuart advocate, and I think that they are all super impressed with
his progress in this past year, and yet I still find reading some of their
reports almost painful. I know they likely over stress certain things just so
there is no question about Stuart continuing to receive the services, but
still, to read that he is the low single digit percentiles for many age
appropriate activities is tough. Stuart's official designation is "Other Health Impaired." I am starting to notice that Stuart has become
more observant about how easy and natural certain things, like drawing
pictures, playing the Wii, and playing sports come to many of his peers and
certainly to his big brother. This cannot be easy for his
self-esteem and I think on some occasions Stuart would rather just not play
than be the one kid that is clearly struggling- I don't blame him. On the playground, Stuart is "desperate" for friends to play with. He will play by
himself for a bit and then he will normally come up and ask, "is there
anyone you think that wants to play with me?" We always tell him just to
introduce himself to other kids and we are sure they will want to play.
Sometimes he does, and sometimes when he finds a friend that wants to play tag,
he promptly "loses" that friend because when the friend wants to
either start chasing him or maybe even change up the game, Stuart freaks out. He
misses or misinterprets social cues. There are some basic things that Stuart
has a hard time "connecting" with. For example, he doesn't understand in
kick-ball that after kicking the ball you need to run to first base. He has no
clue how to use the joystick on the Wii. Yet, other parts of Stuart's
observers' reports reads very promising- such as the part that was supposed to
measure "intelligence" by testing matching abilities- he was in the
95th% percentile. So, we know he is super smart, he just has a hard time
grasping certain concepts. Stuart sometimes manifests his frustrations by
"hitting himself." All I can say is that we know things may not get
better (easier may be the more accurate word) overnight but we will continue
help him along. I'm pretty sure he is going to be just fine.

Some of
the developmental issues discussed above had begun to take effect on Stuart's
behavior with his friends, with his therapists, and in his classroom. Thus, we
finally found Stuart (and us) a child Psychiatrist that had seen children like
Stuart. Long story short, I think Dr. Damore, who incidentally used to be the
child psychiatrist at Sloan-Kettering, is going to be very good for Stuart.
Most of what we have been working on thus far, centers around giving Stuart
proper structure to his day, making him comfortable (less fearful) with his
feelings and proper ways of disciplining him when he acts out.

As
discussed previously in this journal, with each subsequent "clean"
MRI, Stuart's long-term prognosis gets markedly better and better. While this
fact will not make Wednesday any easier, I am optimistic that Stuart is on his
way to many more positive milestones in the near-term and that MRI days going
forward will hopefully just be a day of painful nuisance. Hopefully as the
months turn to years, this type of journal entry where we complain about
problems, while certainly not trite by any means but at the same time not at all life threatening, will be the norm. We are extremely fortunate and we feel
blessed. Unfortunately, this progress is not the same for all kids that are
affected by this awful disease. Through various brain tumor websites/e-mail
chains, we have unfortunately learned of several new "angels." These e-mails are gut wrenching. Each of these children is just as innocent and just as
courageous as Stuart but for some reason they have lost their battle. I know
many of you pray for Stuart, especially around his MRI dates- thank you! In
fact, I had a lady that cleans at my workplace that I rarely see or have conversations
with, approach me the other day and ask "how is your little baby? I pray
for him." I can't tell you how good that made me feel. If you happen to
pray for Stuart this Wednesday, please include in your prayers All of the
children that are fighting this disease and certainly all of those families
that have lost battles.